Any cyclists with ME (Chronic Fatigue Syndrome) out there?

[bobg]

I ask because after 2 1/2 years of tests that seems to be whats wrong with me. The doc said no more riding , or any kind of exercise, ever. I'm very sad. I may ignore him and if I'm knackered for 2 days after a gentle hours ride then I think it might be worth it.....
BTW dont feel sorry for me cos you have no idea what horrible illnesses I thought I had, and if the worse comes to the worse and I really cant ride then I've had 45 years of it and I'll just buy an electric bike

 

[BobWales]

Man that's rough Bob. If it helps, whilst I don't have ME I have witnessed a number of sufferers benefit from going electric. I have meniers, a balance thing, and my bike's throttle helps when I'm very "wobbly". It is possible to continue cycling mate!

 

[bobg]

Man that's rough Bob. If it helps, whilst I don't have ME I have witnessed a number of sufferers benefit from going electric. I have meniers, a balance thing, and my bike's throttle helps when I'm very "wobbly". It is possible to continue cycling mate!

Hi Bob, Thanks for the reply. It seems that one in 250 people have it in a very mild form. Nobody on cyclechat though...

Yeah, bit of a bummer especially as riding is at the centre of all I do. I've yet to get the therapy so there might be a chance that I can do some gentle stuff.
Funny you should mention Menierres cos that's on my CV too!! Its pretty much dormant and has been for a few years but its certainly no fun when it really gets a grip. Good luck with yours and I'm living proof that it goes away albeit slowly.

 

[al78]

I can't help feeling some sympathy for you as I have problems with fatigue myself. I have had to give up on the faster club rides as I would get a major energy crash a couple of hours later and would spend Sunday afternoon and much of the evening in bed. I also have difficulty cycling to work daily as I just don't recover properly overnight, and always wake up feeling tired and groggy. Unfortunately my doctor is of the opinion that doing 19 miles a day is a hell of a lot of exercise, so she thinks it's normal for me to feel tired (not at the age of 32, surely).

Hopefully you will be able to manage some gentle riding.

 

[Mad Doug Biker]

Hi Bob, Thanks for the reply. It seems that one in 250 people have it in a very mild form. Nobody on cyclechat though...

I might not have it, but having Chronic Lyeloid Leukaemia and still receiving heavy medication for it (it's slow moving and it's under control, but I have to take what is actually Chemotherapy, but only in pill form, and without most of the side effects like hair loss), I can totally understand the feelings of fatigue you have - I don't think I will EVER fall out of love with my bed!

They thought I might have chronic fatigue syndrome at one point, but it appears it's just the treatment

Anyway, good luck!

 

[bobg]

Thanks Al and MDB. I feel a bit of a drama queen after what you guys have said! The hospital painted a really gloomy picture that even mild exercise would make the symptoms more acute in the long term hence me being somewhat p$$d off. Too right about bed, I cant wait to get there plus the settee is compelling in mid afternoon.... From what they said, its just a bunch of symptoms, tiredness, weakness, aching muscles, confusion etc. and when they can't find another reason they call it ME. Mind you. like I said, the tests for MS and Motor Neorone put the shoots up me so to some degree this was almost a relief!!
There are 12 bikes hanging up in the garage and all I'm doing is pumping the tyres up ( slowly) ...

 

[Spinney]

I can't help feeling some sympathy for you as I have problems with fatigue myself. I have had to give up on the faster club rides as I would get a major energy crash a couple of hours later and would spend Sunday afternoon and much of the evening in bed. I also have difficulty cycling to work daily as I just don't recover properly overnight, and always wake up feeling tired and groggy. Unfortunately my doctor is of the opinion that doing 19 miles a day is a hell of a lot of exercise, so she thinks it's normal for me to feel tired (not at the age of 32, surely).

Hopefully you will be able to manage some gentle riding.

al78 - You need to try to see a different doctor. If you used to be able to keep up with faster club runs without this fatigue, then obviously something has changed. It is not normal for you to feel tired.

 

[BenScoobert]

Hi Bob, Thanks for the reply. It seems that one in 250 people have it in a very mild form. Nobody on cyclechat though...

They couldn't be bothered to reply, get it? couldn't be bothered, oh never mind

Seriously though, a guy I work with got an electric for this reason as he couldn't cycle commute any more, he loves it and can peddle as hard or as light as he feels the urge.

Good luck with finding ways round

 

[bobg]

al78 - You need to try to see a different doctor. If you used to be able to keep up with faster club runs without this fatigue, then obviously something has changed. It is not normal for you to feel tired.

Not sure about this Spinney. It may well be quite normal? Until 2 1/2 years ago when this kicked off I was doing 30 every morning, popping into the gym for an hour, quick swim and ride home. I was 60. This steadily and very slowly became more difficult over that period till I could barely climb the stairs. It's progressive and made worse by exercise (I'm told) I must have seen a dozen doctors during that period and only a month ago did one of them suggest ME and refer me to a specialist.

 

[bobg]

They couldn't be bothered to reply, get it? couldn't be bothered, oh never mind

Seriously though, a guy I work with got an electric for this reason as he couldn't cycle commute any more, he loves it and can peddle as hard or as light as he feels the urge.

Good luck with finding ways round

Thanks for the good wishes Ben. My only obstacle with buying an electric is in my head. I need to get over the fact that its cheating

 

[Ravenbait]

I was diagnosed with ME and FMS about 10 years ago. I received absolutely the opposite advice. Well. I received a bunch of absolutely worthless advice, amongst which was that I should have kids to keep me company when I'm old. I wish I were joking.

I woke up one morning and realised that there was no effing way I was going to let myself end up in a wheelchair, which was where I was headed. I joined a gym and started very slowly with weights once a week. Then twice a week a few months later Then three times a week. Then I added a small amount of cardio and progressed from there.

Having gone from being bedridden to cycling 20 miles each way on a commute I was told I no longer had ME, may never have had ME, but I might have lupus, only the blood tests were incorrect and yadda yadda yadda.

Whatever. I stopped paying attention. I still get tired -- I don't ever wake up bright-eyed and busy tailed, rather more feeling like I've been run over by a truck, repeatedly -- I have issues with trigger points and arthritis and sun-sensitivity and fatigue. But I've learned to listen to what my body wants and needs and pay attention to it. I balance the need for a minimal amount of exercise to stop me slipping down into that cycle with trying not to do too much because when I over-train it can make me crash for weeks.

The specialists will give you the best advice they can, but it's still your body and you're the one who has to live with it. They don't have a magical connection to see exactly how various activities make you feel. Only you know how you feel. They may offer drugs or cognitive behavioural therapy. They may tell you that some things are advisable and some things aren't. They may tell you some things will help and some things will make it worse. But only you can find out for sure if they're right or not.

I can't advise you on what is best for you. All I can say is that if I'd listened to what my specialist said I'd be on my arse with children crawling around my feet. As it is I'm still cycling and have since started competing in triathlons. I'm not far off 40, so the age difference may be a factor, but you asked if there were any cyclists out there with ME. I know of at least one paralympic athlete who has ME. It isn't necessarily the end of the world. I'd be tempted to ask how much of their advice is coloured by your age.

Do what's right for you.

Sam

 

[BrumJim]

Have you read about pacing? Sounds like that could be a good way to keep cycling with ME. Fits in with the advice you have already in that if cycling is making you tired, it is making the condition worse.

My wife had ME for 7 years. She is better now - can discuss this further if you want, as there is no magic pill or special therapy that will help everyone get better, but there was something that she tried that sorted it.

If they tell you to try Graded Exercise Therapy (GET), tell them to take a long walk along a short pier. Seriously. Does more harm than good. If they prescribe CBT instead, then ask the therapist what he knows about ME. Unless it is enough, then it'll do no harm, but not much good either.

Join the ME Association - you will find out a lot more that your doctor won't or can't tell you.

 

[bobg]

Thanks guys, thats soo helpful and has given me cause for optimism. I've only had the initial diagnosis, all the therapy and paced exercise comes later I guess. Before I knew what it was I was exercising within my limits cos thats what the neurologist said and although i felt pretty knackered the following day/s it was made up for by the satisfaction. As for aches etc, I've always had them cos I've always exercised.
I'll take what they tell me with a degree of scepticism then. My body wants to jump on my bike tomorrow whatever the consequences
Know just what you mean about that run over by a truck feeling in the morning..........Thanks for the pm offer, I'd like to take you up on it please. Don't want to bore all these CCers with this thread bumping to the top

 

[Mad Doug Biker]

Thanks Al and MDB. I feel a bit of a drama queen after what you guys have said! The hospital painted a really gloomy picture that even mild exercise would make the symptoms more acute in the long term hence me being somewhat p$d off. Too right about bed, I cant wait to get there plus the settee is compelling in mid afternoon.... From what they said, its just a bunch of symptoms, tiredness, weakness, aching muscles, confusion etc. and when they can't find another reason they call it ME. Mind you. like I said, the tests for MS and Motor Neorone put the shoots up me so to some degree this was almost a relief!!
There are 12 bikes hanging up in the garage and all I'm doing is pumping the tyres up ( slowly) ...

Ah yes but CML and ME are two totally different things, so no, if you have ME, don't feel like such a drama Queen - that's up to the hypochondriacs of this world to do.
As for the likes of Motor Neurone Disease and others that are similar - it must be trully awful to end up with that sort of thing and I can understand why some want to go to Switzerland to ....well, to be bumped off.

Oh and the bikes will appreciate what you are doing, even if it is slowly (I have a puncture to sort out and quite frankly I can't be bothered right now, so good on you for pumping the tires up!).

Thanks for the good wishes Ben. My only obstacle with buying an electric is in my head. I need to get over the fact that its cheating

Oh but if it's a motor in your bike, then nobody else need ever know you are cheating, I mean, if you were to beleive everything you read, then that's what they did in the Tour De France, and if they can get away with it, I'm sure you can too!

 

[Spinney]

Not sure about this Spinney.  It may well be quite normal?  Until 2 1/2 years ago when this kicked off I was doing 30 every morning, popping into the gym for an hour, quick swim and ride home.  I was 60.  This steadily and very slowly  became more difficult over that period till I could barely climb the stairs. It's progressive and made worse by exercise (I'm told) I must have seen a dozen doctors during that period and only a month ago did one of them suggest ME and refer me to a specialist.

Yes, but al78 says he is only 32, and his doctor hasn't tested him for anything, just saying it is normal. I don't think it is normal at 32...